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May 2002

STATEMENT OF JIM MCNULTY
ON BEHALF OF THE NATIONAL ALLIANCE FOR THE MENTALLY ILL
BEFORE THE HOUSE OF REPRESENTATIVES COMMITTEE ON APPROPRIATIONS
SUBCOMMITTEE ON LABOR, HHS, EDUCATION AND RELATED AGENCIES
MAY 7, 2002

Chairman Regula, Representative Obey, and members of the Subcommittee, I am Jim McNulty of Bristol, Rhode Island, President of the National Alliance for the Mentally Ill (NAMI). Like so many NAMI members, mental illness has directly affected my life. In 1986, I was first diagnosed with bipolar disorder, also known as manic-depressive illness. NAMI is the nation's largest grassroots advocacy organization, 220,000 members representing persons with serious brain disorders and their families. Through our 1,200 chapters and affiliates in all 50 states, we support education, outreach, advocacy and research on behalf of persons with serious brain disorders such as schizophrenia, manic depressive illness, major depression, severe anxiety disorders and major mental illnesses affecting children.

Mr. Chairman, for too long severe mental illness has been shrouded in stigma and discrimination. These illnesses have been misunderstood, feared, hidden, and often ignored by science. Only in the last decade have we seen the first real hope for people with these brain disorders through pioneering research that has uncovered both a biological basis for these brain disorders and treatments that work. From NAMI's perspective, this progress was confirmed for all Americans in 1999 with the release of the Surgeon General's Report on Mental Health. More recently, President Bush affirmed these principles in a speech in New Mexico when he declared:

"Millions of Americans, millions, are impaired at work, at school, or at home by episodes of mental illness. Many are disabled by severe and persistent mental problems. These illnesses affect individuals, they affect their families, and they affect our country. As many Americans know, it is incredibly painful to watch someone you love struggle with an illness that affects their mind and their feelings and their relationships with others. We heard stories today in a roundtable discussion about that -- what the struggle means for family. Remarkable treatments exist, and that's good. Yet many people -- too many people -- remain untreated. Some end up addicted to drugs or alcohol. Some end up on the streets, homeless. Others end up in our jails, our prisons, our juvenile detention facilities. Our country must make a commitment: Americans with mental illness deserve our understanding, and they deserve excellent care. They deserve a health care system that treats their illness with the same urgency as a physical illness." President George W. Bush, April 29, 2002.

These recent events - the 1999 Surgeon General's Report, and the President's statement- mark a historic turning point and growing recognition of the burden of mental illness on our nation and the need to advance both scientific research and access to treatment and services for individuals living with these illnesses. These developments also reflect well on this Subcommittee's wise and substantial investment in biomedical research directed to the most complex organ in the human body, the brain. In NAMI's view, scientific research - made possible by the support of this Subcommittee - has laid the foundation for the Surgeon General's report and President's Bush's call for parity in insurance coverage.

Severe Mental Illness Research at the NIH

NAMI deeply appreciates the leadership of this Subcommittee in moving to significantly increase the National Institutes of Health (NIH) budget. Your leadership has been the driving force behind this bipartisan effort in Congress - now endorsed by the Bush Administration - to complete the job of doubling the federal commitment to biomedical research over a five-year period.

Mr. Chairman, scientific discovery, made possible through this Subcommittee's support for the NIH, is bringing new treatments to people living with serious brain disorders such as schizophrenia and bipolar disorder. Tremendous advances in treatment of severe mental illnesses occurred during the last ten years, the Decade of the Brain, from the introduction of Prozac and Clozapine and other new drug discoveries that have virtually revolutionized mental illness treatment. Today, many more consumers, patients with serious mental illnesses, stand able to take charge of their lives, to be productive, to enjoy recovery, because of these treatment advances.

Treatment for mental illnesses, while impressive and with a stronger record of efficacy than those for cardiovascular disease and other medical disorders, is either inaccessible or ineffective for some patients and their families. Many people with severe and persistent mental illnesses find only incomplete relief from their symptoms; disability is still all too commonly associated with these illnesses. In my case, treatment for bipolar disorder has proven effective, but never for all of the symptoms. Individuals with obsessive-compulsive disorder, a brain disorder that has been pinpointed to specific higher regions of the brain, still often fail to achieve much gain in treatment. For children and adolescents, matters are worse because we know so little about the illnesses as they emerge during development, and we know even less about how to effectively and safely treat them.

We should not underestimate how much more must be learned about the brain regions involved in these serious brain disorders, the molecules at the roots of the terrible symptoms, and the genes that lead to vulnerability to these illnesses. The Decade of the Brain has really only brought us to the threshold of discovery when it comes to brain diseases such as schizophrenia, manic-depressive illness, obsessive-compulsive disorder, childhood mental illnesses and others. We are only now poised to fully probe and finally understand the biological underpinnings of the most serious mental illnesses.

That severe mental illness research ought to be a priority for our nation, is demonstrated by data from the World Bank and World Health Organization. Severe mental illnesses, including major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder, account for four of the top 10 most disabling illnesses in the world. These brain disorders account for an estimated 20 percent of total disability resulting from all diseases and injuries. Mr. Chairman, the public health burden to our nation from severe mental illnesses demands that research on these diseases be a high priority, especially given the scientific opportunities that exist in the brain sciences. The national need for severe mental illness research is also starkly demonstrated by particularly terrible statistics. Suicide is the eighth most common cause of death in this country and the fourth most frequent cause of life lost under age 65. Rates are increasing among young men and the elderly. As it stands, 30,000 Americans will die by suicide this year, most of whom have a serious mental illness. The most severe mental illnesses - schizophrenia and bipolar disorder-disproportionately lead to suicide. Ten percent of the 2,000,000 U.S. citizens with schizophrenia will take their own lives; about half will make a suicide attempt at some point. Fifteen percent to 20 percent of the approximately 2,000,000 Americans with bipolar illness will die by suicide.

NIH Investment: A Call for Increased Funding & Accountability

NAMI applauds the bipartisan leadership of this Subcommittee in supporting increases for the NIH. NAMI also supports President Bush's proposed increase for FY 2003 of $3.71 billion - bringing the agency's total up to $27.3 billion - completing the 5-year commitment to doubling the federal investment in biomedical research. NAMI has also endorsed the recommendations of the scientific community and the Ad Hoc Group for Medical Research Funding and their proposal for a FY 2003 funding level at NIH of $27.3 billion.

But increased resources are not the only important objective for NIH: better accountability is also essential. NAMI applauds your efforts to fairly boost NIH funding and limit disease-of-the week approaches to appropriations. Nonetheless, NAMI urges the Subcommittee to press NIH to invest their resources according to public health need as well as scientific opportunity, as the 1998 Institute of Medicine (IOM) report on NIH priority setting called for. NIH must balance its investment among diseases so that increases in the budget go preferentially to address illnesses that are disabling and costly and have been underfunded in the past.

It is obvious to NAMI that severe mental illnesses would, and should be, a top research priority if public health burden is the principal criteria by which public research dollars are allocated. Yet, based on NIH's own recent estimates, $1.00 is invested in research for every $6.86 in costs of AIDS, $9.96 in costs of cancer, $65.65 in costs of heart disease, and $161.26 costs in schizophrenia. In other words, 15 cents is spent on AIDS research per dollar of costs, compared with 10 cents for cancer, two cents for heart disease, and less than one cent for schizophrenia. This is obviously not a wise research investment strategy for the United States.

NIMH: The Key to the Cure for Severe Mental Illnesses

For NIMH, we also applaud this Subcommittee's leadership, demonstrated by your boosting its appropriations significantly in the past few years, up to its current level of $1.254 billion. NAMI is also grateful for the Bush Administration's proposed $105 million increase for NIMH (up to $1.359 billion). However, NAMI would urge the Subcommittee to fund the NIMH up to the "professional judgment" recommendation of $1.45 billion. NAMI believes that the "professional judgment" recommendation is needed in order to increase the agency's success rate for reviewed grants to at least 750 new and competing grants. NIMH is currently attracting more research grant applications than any other institute due to the leadership of the institute and the tremendous research opportunities that exist in the neurosciences and in severe mental illness research. NAMI believes that we must ensure that this time of interest, strong leadership, and research opportunity is taken so that people with serious brain diseases have the best hope for the future, for themselves and for their families and future generations.

We urge you, Mr. Chairman, to help ensure that NIMH continues its move to spend its taxpayer dollars wisely, with investments in basic neuroscience and molecular biology that undergird the new treatment frontier for severe mental illnesses. NAMI applauds the accomplishments of recently departed NIMH Director Dr. Steve Hyman to increase the agency's commitment to research on serious brain disorders and to ensuring that resources are directed towards pre-clinical, clinical, and services research. NIMH should continue its efforts to identify genes linked to severe mental illnesses; to fund and expand clinical research into psychotic illnesses, serious disorders in children, and in mood disorders; to continue the probe of the biology of serious mental disorders including schizophrenia, mood, and anxiety disorders.

NIMH should also be encouraged to use the tools of behavioral science to better understand the expression and best treatment of severe mental illnesses. However, NAMI strongly recommends that research in prevention and psychosocial research should be redirected in order to address problems associated with serious mental illnesses, consistent with the recommendations of NIMH's own National Advisory Mental Health Council. NAMI agrees with the recommendations of the Council that the prevention research portfolio has all but excluded serious mental illness research and instead focused on basic behavioral science issues and or social problems such as adolescent relationships, divorce or poor self-esteem. NAMI believes that we cannot let another five years go by studying children who misbehave while we know so little about serious mental illnesses in children and how to effectively treat these disorders.

What research issues are most compelling for NAMI's 220,000 members living with severe mental illness? 1) More basic research on the brain and higher brain functioning; 2) More pre-clinical research on the genes, molecules, and brain regions involved in severe mental illnesses; 3) More clinical research aimed at understanding the best treatment for these serious disorders and translating that research into practice; 4) More research aimed at better understanding and treating these brain disorders in children; 5) Research aimed at diminishing relapse and disability in severe mental illnesses; 6) More research on how people with severe mental illnesses best receive treatment and services; 7) An accountable and responsible research investment strategy that will help the nation's individuals with severe mental illnesses and their families, as well as the country at large, which must shoulder the burden and costs of these illnesses.

Finally, Mr. Chairman, NAMI would like to urge that NIMH's colleague institutes, the National Institute on Drug Abuse (NIDA) and the National Institute on Alcohol and Alcoholism (NIAAA) be directed to work cooperatively with NIMH on the pressing public health crisis posed by persons diagnosed with a severe mental illness who have a co-occurring substance abuse disorder. NAMI believes that a large and growing body of scientific evidence is making clear that integrated treatment, as opposed to parallel and sequential treatment, is the most effective means of treating these co-occurring disorders. NAMI urges that NIMH, NIDA and NIAAA should work in partnership to ensure that progress continues in our efforts to better understand co-occurring mental illness and chemical dependency.

SAMHSA & CMHS

Mr. Chairman, in addition to urging the Subcommittee to support increased funding for brain research, I would also like to note the importance of federally funded mental illness services through the Center for Mental Health Services (CMHS) at SAMHSA. Federal support for community-based care is a critical resource for children and adults with the most severe mental illnesses. With many states facing large cuts to their mental illness treatment budgets and the continuing long-term trend of reducing their psychiatric hospital beds, the federal investment in community-based care continues to grow in importance. NAMI is excited at the news that President Bush has formed a White House Commission to examine strategies for the federal government to assist states and localities in modernizing their public mental health programs to address gaps in services and how to improve both quality and access. This Commission will be releasing its findings and recommendations within a year. In the meantime, NAMI would like to recommend the following key priorities for the Subcommittee in considering SAMHSA's FY 2003 budget request.

PATH

NAMI strongly supports the $7 million increase proposed by the President for the Projects to Assist Transition from Homelessness (PATH) program to help homeless individuals with severe mental illnesses and co-occurring substance abuse disorders (increasing funding to $47 million). The Administration's proposed increase for PATH would result in an additional 31,000 homeless individuals with severe mental illnesses receiving services. Given the disproportionate representation of adults with severe mental illness among the chronically homeless population, we strongly support the Administration's efforts to place the highest priority in meeting their needs for permanent supportive housing and community-based services.

Mental Health Block Grant (MHBG)

NAMI applauds the actions of this Subcommittee last year to increase the MHBG by $13 million, up to its current level of $433 million. This increase is a major step forward in helping states address the widening gaps in our nation's public mental illness treatment system. Unfortunately, the President's budget proposes freezing the MHBG for FY 2003, despite the growing strains on state mental health budgets. As noted above, budget cuts at the state level are resulting in a continued widening of gaps in the public mental illness treatment system. The consequences of these emerging cracks in the service system are readily apparent, not just to our consumer and family membership, but also to the public: the growing number of homeless adults on our nation's streets who receive no treatment services, well publicized tragic incidents involving individuals with severe mental illness who are not accessing adequate treatment services and the growing trend of "criminalization" of mental illness and the stress it is placing on state and local jails and prisons.

NAMI urges the Subcommittee to support an increase for the Mental Health Block grant program for FY 2003 and to target any additional funds for the program to replication of evidence-based service delivery models for persons with severe mental illness in the community. In particular, NAMI would urge you to direct CMHS to target Block Grant funding to evidence-based programs such as assertive community treatment (also known as PACT). PACT programs use a 24-hour, seven day-a-week, team approach that delivers comprehensive treatment, rehabilitation and support services in community settings. High-quality PACT programs are typically implemented at a cost that is significantly less than placing an individual in a jail, a residential treatment program or a hospital. PACT is especially effective in serving persons who are the most treatment resistant, persons with a co-occuring mental illness and substance abuse disorder and persons who are high users of inpatient hospitalization services.

NAMI is also concerned that the Substance Abuse Treatment and Prevention Block Grant is not currently supporting programs serving persons dually diagnosed with mental illness and addictive disorders. Evidence-based research, as confirmed by the NIH, verifies that integrated treatment, as opposed to parallel collaborative or sequential approaches, is the most effective model for serving persons with a dual diagnosis. NAMI therefore recommends that the Subcommittee direct SAMHSA to allow greater flexibility for states in using both programs to promote integrated treatment services for persons with co-occuring mental illness and addictive disorders. Finally, NAMI recommends that the Subcommittee consider requiring states to report an unduplicated count of persons served by diagnosis, age and services consumed using the targeted initiative MHBG funds.

CMHS Jail Diversion

The President's budget requests $5 million for the CMHS Jail Diversion program for FY 2003. People with serious mental illness are frequently arrested for minor offenses, many times as a result of homelessness, and then they are incarcerated in jails where their mental health needs are not met. There are also significant numbers of persons with serious mental illness who come in contact with the police, but are not arrested. The U.S. Department of Justice estimates that 16% of all inmates in state and federal jails have a severe mental illness, as many as 283,000 people with serious mental illnesses were in jail or prison - more than four times the number in state mental hospitals. The CMHS Jail Diversion program assists states and communities in developing treatment programs to get non-violent offenders with mental illness out of the criminal justice system and into treatment. NAMI urges full funding for the Administration's request for the CMHS Jail Diversion program for FY 2003.

CMHS Discretionary Programs

The President's budget proposes a $7 million reduction for the CMHS Projects of Regional and National Significance (PRNS) for FY 2003. Included in this proposal is a reduction for the Community Action Grants program. The Community Action Grants at CMHS are a critical link in federal efforts to support knowledge dissemination and replication of evidence-based practices, including integrated treatment, jail diversion, police training and cultural competence. There is growing concern that without guidance from Congress, CMHS will discontinue Community Action Grants in FY 2003. Communities have used these grants constructively to stimulate the development of good programs and services for people with severe mental illnesses. NAMI supports continuation of the Community Action Grants program in FY 2003.

Conclusion

Mr. Chairman, thank you for the opportunity to offer NAMI's views on FY 2003 funding for programs of critical importance to people with serious brain disorders. NAMI looks forward to working with you in the coming months to educate both the general public and your colleagues in Congress about the critical importance of investment in biomedical research and improved services for children and adults living with severe mental illness and their families.

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